By Lene Andersen. Health care writer, RA and disability advocate, wheelchair user and camera nut. Author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain

Monday, March 18, 2013

Real RA: The Great Pretender

People with RA lie all the time.

How are you?Fine. You?

How’s the pain today?

Not bad.

Are you worried?

Not at all. I’m sure
everything will be OK.

It’s a necessity of life with this damn disease. If you're
honest, not only will your friends and family start avoiding you, but you'll
start to bore yourself, too. There's only so much unrelenting crap anyone can
deal with before it gets old and miserable and you want to run screaming for
the hills. But when you live inside the crap, there's no way to run.

And so you lie.

You lie to the people you love most because seeing the worry
in their eyes makes you want to protect them. You lie to acquaintances because
it takes a certain level of intimacy to talk about the true impact of your RA
on your life. You lie to the clerk at the grocery store because she doesn't
really want to know how you are while cashing out your orange juice, crackers
and toilet paper. You lie to your doctor, telling them only the most urgent
issues because otherwise you'd be there all day. And you lie to yourself,
because if you don't, if you give it half a chance, the RA will take over and
consume your life.

Sometimes, living with RA is like being a duck. You look
cool and calm, but underneath you're paddling like mad. To achieve that cool
and calm, you have to play fast and loose with the truth. The truth is hard and
ugly and painful and cannot be allowed to gain purchase. The truth will slide
over you, slowly covering all of you like an oil slick until it weighs you down
and you cannot swim anymore.

That's what it feels like. The harder it is, the more
important it can feel to maintain that duck-like serenity. Everything is out of
control, so you control what you can. You hold on tight, pretending to be better
than you are. You fear that if you let go, you might disintegrate.

But will you?

I spent my entire life pretending I was better than I was.
More capable, with more ability, less pain and during the rough times, coping
far better than I actually was. And then I had the Big Flare, got Enbrel, got
better and made myself a promise. I decided to become the person I'd always
wanted to be and that wasn't just about becoming a writer. It was also to not
pretend anymore, to be emotionally honest with myself and with others and
forcing myself to do some of that work in public, here on this blog. It hasn't
been easy, but with practice I have (mostly) let go of the mask of being fine
when I'm not.

In the process, I discovered that pretending takes an
unbelievable amount of energy. That by being honest about my limits and how I
am, I've actually ended up having more energy that I need for things like
getting through the day and doing my job. Am I always honest? No. I don't tell
the clerk in the grocery store exactly how I am doing today because I’m aware
that there are social mores governing self-expression. I don't tell my doctor
every little thing because both she and I have other things to do than spending
the day rooting around in the minutia of my health. Most of the time, though, I
tell it like it is.

And then there are the times where I become aware that the
lesson isn't learned quite yet.

Two weeks ago, I noticed an odd swelling between my ankle
bone and the Achilles tendon on my right foot. I have no idea how long it's
been there — it didn’t hurt. It also felt as if that foot was turned in a bit
more than before and the toes were slightly more bent. I told three people
before I got a grip on the freak-out and one of them was my rheumatologist's
secretary when I called to make an appointment.

And then I told no one else, because I feared that if I did,
I would disintegrate.

I saw my doctor last week and the swelling turns out to be
tendinitis — perhaps related to what must've been a flare, perhaps not. Bottom
line is that I've upped my Humira and realized it’s time to pay more attention
to being emotionally honest.

((HUG)) Thank you for your honesty, it encouraged me to be honest and not fear other people's reactions. I'm so, so glad we are friends. ;)

I too found I started to feel better once I took the risk of trusting a few people with my true feelings. I thought it was just a fluke or my mind playing tricks on me but what you've just said about the energy it takes to hide stuff really bears out what I was thinking, x

Lene...Once I started reading this post, I just read faster and faster and faster. It struck such a chord in me. i was reading, truth, and I wanted to see the truth, all at once, all right now. You have pulled back the curtain from my most inner thoughts...thoughts I didn't know were there. Very well done. Very thought-provoking.

I so can relate to this post as well. I also have tendonitis in an extra bone I have in my foot, unlike yours might actually hurts and is quite big and swollen.I am very much prentending daily, and underneath its complete turmoil.

Hi Lene! First, congratulations on your book! Second, my mother suffered from a disease called rheumatic rheumatism when she was a child (in the early to mid 1960s). She has tried to find out what it was, but had no luck. Do you have any idea of what it is, or where we could look to find out? Thanks!

Cathryn - they had odd names for things back then. In the 60s, I was diagnosed with rheumatic fever, which it clearly wasn't. Rheumatic rheumatism is just another way of saying arthritis twice. If you can tell me more about her symptoms, I could try to narrow it down. You can e-mail me at landers5ATgmailDOTcom

Yes! I am lying to most people most of the time, but I have my reasons. As a professional musician I don't want to lose work because other people think I am not able to play. However there are some people that I completely unload on - they hear the whole story all the time. And that's what friends are for!

I've had times I've said I'm fine and then added an aside to some friends I can say it to, *I'm* fine, the body's falling apart, but *I'm* fine. Meaning, too stubborn to let the darn thing boss me around emotionally. And I have no doubt that that's where some of your I'm fines come from too.

After I tell someone I'm fine, I always think to myself, "Fine relative to my own standard". I'm fine b/c I"m achey from the fibro but not in a ton of pain. I'm fine b/c I'm not lying in bed crying. I'm fine b/c there's nothing newly wrong, no new drug side effects, nothing major going on. That's my definition of fine, even if no one else knows it.

Lene, thanks for laying it out there like it is. I appreciate your honesty. I've noticed that after a while, people stop asking how you're really doing. It's hard when you don't personally experience it. One colleague, whose wife has MS, get's it completely and always asks.

Sorry to hear about your achilles tendon. Mine are all shot so take good care of them and hope the increased dose of Humira slows down damage.

I used to hide my pain and frustration every time someone asked me how am I feeling... In the past few months I have been feeling better but actually no one believed me... It seems that when I tried to hide it, people knew I did not feel well!

Lene - you are yet again soooo right! I constantly say "fine" whether I am or not even with my friends and family. When I have a bad day I just don't feel like I can complain about it - this would just happen too often wouldn't it? No one wants to listen to that. I have encountered a couple of people who are actually interested in how I'm doing and do ask. Interesting - and somewhat unusual.